Medical Marijuana: The Gray Area

Medical marijuana has been appearing in the news and in documentaries more and more in recent years. Many articles that I come across seem to either be full-fledged in favor of marijuana, claiming it will ease pain, help with Parkinson’s and cancer, and that it will control seizures/epilepsy; or the articles are against it, suggesting marijuana is a gateway drug, and that the use of it even for medical reasons will increase its recreational abuse.

Numerous caring and concerned friends and family have asked what I think about medical marijuana. I answer as clearly as I possibly can, but, quite honestly, it is extremely complicated. Today, I will try to clear things up, and share my opinions about marijuana.

Am I an advocate for medical marijuana? Absolutely. I am 100% in favor of the use of marijuana for the treatment of epilepsy, as well as for the treatment of other medical conditions. Has my daughter ever tried it? No. Will she try it? Not any time in the near future.

These answers may seem contradictory, but epilepsy is complicated. There is no one size fits all treatment for seizures. The causes of epilepsy vary. The side effects of anticonvulsant medications vary. Finding the right treatment for each individual is so unique for each patient. It just is not as simple as some stories going around social media have made it sound.

According to the Epilepsy Foundation website, there are currently about 58 medications that are prescribed to control seizures. Some of the medications in this list are listed twice, as they may be manufactured slightly different from each other, such as an extended release form versus traditional. Nonetheless, there are several medications, and several combinations of medications for neurologists and caregivers to choose from. The goal is to find the least amount of medications with the least amount of side effects that will control or stop seizure activity from occurring. Add marijuana to the list, and the number is now 59. Marijuana is simply one more choice.

When a person experiences their first seizure, the neurologist will have questions. Most of their questions will be addressed to the witness of the seizure, and not the patient himself. Of course, what happened before and how the patient felt afterwards are of some importance, the appearance of the seizure and the length of the seizure are key aspects for the neurologist to consider. If only the right side of the body is affected, the neurologist knows the seizure activity was on the left half of the brain. If the patient was simply staring off and blinking, it may have been an absence seizure. If there was only one seizure, or if there were 15; if it lasted 10 seconds or 30 minutes; if the patient missed a night’s sleep or they hit their head on something or if they have had added stress in their life recently, etc. The questions are endless. The answers to these things will help the neurologist choose a medication that will most likely benefit the patient the most. There is no “eeney, meeney, miney, mo” in choosing a medication. The neuro makes an educated guess as to which medication will most likely help their patient. Only time (and patience) will tell if this guess was right.

In many cases, one medication will not control a person’s seizures. The neurologist will add a second, third, maybe as many as twelve different medications. Many antiepileptic medications interact with each other. When combining multiple medications, the neuro must watch for increases or decreases in the first medication that was prescribed. Certain medications will not be prescribed together, as they may have adverse effects to each other. Marijuana will not be prescribed with Onfi, a newer medication, as studies have shown this combination to be dangerous.

Phenobarbital has been prescribed for epilepsy for over 100 years. It was the first medication prescribed to my daughter in 1998. Were there newer medications? Yes, there were at least ten more. The reason many neuros still prescribe phenobarb is because they know it works, and they know what side effects to watch for. When a new medication is introduced to the world of neurology (or any field of medicine, I imagine – this is simply the world I know), it takes years for all of the “known side effects” to surface. Before getting FDA approval, medications go through numerous test studies. During these studies, guinea pig patients are watched closely, and they report the good and bad effects they experience. These effects may or may not be directly related to the new medication. Also during the studies, labs are able to fine tune the dosing of the medication.

It is my understanding that marijuana has not been legal on a federal level since long before it was discovered to have probable benefits in helping some people control intractable epilepsy. Although punishments have been light for people that have used marijuana, even for recreational use, without the ability to use federal funding, studies that would benefit the epilepsy community, as well as other medical communities, have not been done to the extent that people in the field would deem credible. I have read multiple articles, and I have heard multiple neurologists speak on the matter. There is a belief amongst most professionals that there are some benefits from the CBD oils that are extracted from the marijuana plant to assist in preventing seizures. This is excellent news for the epilepsy community. However, without proper studies, the dosing of the oil is variable.

Accurate dosing is imperative when treating epilepsy. Some people will have one seizure a week, take a nap, and go about their daily business. For people like my daughter, if she has one seizure, it will start a domino effect, and she will have a cluster of seizures until we make medication adjustments (increases). Seizure medications have what they refer to as a “therapeutic level.” For example, phenobarbital is most effective for controlling seizures if the level of medication in the blood is between 15 and 40. The medication is usually administered twice a day, ensuring that the level of the medication will consistently stay in that therapeutic range 24 hours a day. If a dose is missed, the level will drop below 15, and possibly allow a breakthrough seizure to happen. Avoiding peaks and valleys of medication levels is a high priority when trying to keep seizures at bay.

Because the CBD oils (the extract from marijuana believed to have the most benefits in controlling seizures) are a fairly new discovery, and because numerous studies have not yet been performed, the dosing is not yet regulated. The dosing is close, but may vary from one preparation to the next. For a person that may experience 300 seizures in a day, CBD oils may get the number of seizures down to 50. Slight variation of dosing may not make an enormous difference for a person like this. For a person that typically has no seizures (like my daughter), the variable dosage increases the chances of breakthrough seizures that can be extremely difficult to control again. We do our best to minimalize the chance for her to have even one breakthrough seizure.

It is my understanding that the federal government has lifted some of their restrictions, and more studies are now being conducted. It is my wish that, even if it is choice number 59, marijuana will be beneficial to people living with epilepsy. It will not be the answer for everyone. It will not even be the answer for the majority of everyone. But if the use of medical marijuana can help even just a handful of people control their seizures and have a higher quality of life, I truly hope it becomes more available to everyone soon.

I have read stories, and I have been told of some people moving to states where medical marijuana is legal. They want their child’s seizures to end, and they want to fix the problem – understandably. Because of the complexity of the brain, because of the complexity of epilepsy, I implore every caregiver to work with your neurologist/eptileptologist. These doctors have made it their life goal to help control seizures. They understand it is frustrating and terrifying, and they want to help you. Choosing to try marijuana without the support of a neurologist is not a wise choice. There are many doctors in the field that will be more than willing to work with you to find the best treatment possible for your loved one. Nobody is in this fight alone. When we stand together, we can win more of the battles.

As you can see, I am in the gray area. I see the benefits, but I must be a realist when choosing the best treatments for my daughter. I truly hope my perspective will encourage others to openly research the pros and cons of marijuana, and be able to make the best educated choice for themselves or their loved ones.

2 thoughts on “Medical Marijuana: The Gray Area”

My thoughts EXACTLY. The timing of this post is uncanny. In our case, surgery is looming soon and it seems to have opened the vault for EVERYONE to makes comments and opinions about my daughters care. Asking if we have tried this or that. Today is a day where my frustrations are high on this topic and you wrote eloquently (much nicer than I ever could). Of course we, as families living with epilepsy in the home, have explored and continue to explore every and any option.
Thank you for sharing your thoughts on the subject. You are amazing.

Absolutely, Kim! I feel like I have had conversations with some people, and the words fail me. It is complicated, and we know how hard we work with our physicians to find the best avenues to take. Feel free to share my post to help explain to your caring friends where we stand. XO

The Purple Elephant in Our House

My name is Dodie. I am a mother of four daughters. My youngest daughter was born in 1997, and in April of 1998, she was diagnosed with epilepsy. There is a saying in the epilepsy community: “I have epilepsy, epilepsy doesn’t have me.” While I want to believe this statement, and while I have done my best to always focus on the positive, and to live life to its fullest, I would be a liar if I told you epilepsy has not affected many decisions in our lives. Epilepsy has affected so many life choices, big and small. This blog is a place for me to share our experiences, our choices, our emotions, and our story.